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Member
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Join Date: Sep 2009
Posts: 884
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Member
Join Date: Sep 2009
Posts: 884
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tests are in the eyes of the beholder...
When I already required intermittent respiratory support due to "recurrent acute respiratory failure" (according to my pulmonologist), the validity of this was questioned by a leading expert neurologist (to whom I was referred) , because it was based only on my pulmonologist's clinical impression and effort dependent tests.
Therefore I was referred to a respiratory neuro-musuclar expert to have more objective and reliable tests.
I had a sleep test, that showed of CO2 retention. This was then followed by direct measurement of diaphragmatic strength , which showed significant objective, not effort dependent weakness and fatigability (in a myasthenic pattern).
Based on this the world leading neurologist diagnosed myasthenia and admitted me for plasmapheresis (which led to dramatic, and very short lived improvement). He also did a test searching for possible antibodies that were not found in the usual assays, and this test detected low-affinity anti-MuSK
I was now told by a "genius" neurologist, that those test results could be seen in the normal healthy population.
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